Random Acts of Kindness - WEGO Health
#HAWMC - WEGO Health
Last year March 2014, the 26th day to be exact, I received what was I felt the most incredible “act of kindness and compassion” that I had ever seen or received.
I was in Washington DC, as a part of the Annual Summit “on the Hill” with the Arthritis Foundation. It was on the 26th, we had officially ended the Summit, and I was awaiting the arrival of my Mother-In-Law, whom I had never met. Even though we (my husband and I) had been together for 10 years, I had only gotten to know her through call, emails, and so forth. I was also awaiting the arrival of my spouse. He was going to be going to the Dallas-FT. Worth Airport, to board a plane and come to DC to join me. We were considering this also a vacation, since I had never been to DC before; so all of it was something we had looked forward to for many months.
About noon there on the East Coast, I received what seemed like several “emergent” cell phone calls from my daughter. So happened I had been outside standing in front of the Hotel there in DC. waiting on my Mother In Law to pick me up. My spouse, Jim was going to arrive a bit later in the evening, so she was going to take me to her home, and let me get some rest.
As I went into the lobby again, wondering why it was taking her “Hilda” so long to pick me up. But, in the same time frame, I had gotten 5 or 6 calls again, from my daughter. So, I went into the lobby a bit further, to call and be able to hear. My daughter began in a very frantic voice, also hysterical, telling me that Jim, my husband had been in a very severe car accident in Dallas on his way to the airport to fly out. Well, I almost fell to pieces, but was trying to get hold of the trauma team in Baylor Hospital where he was taken and find out more about his injuries.
At that moment, time along with myself, seemed to “hit the floor” literally. My knees buckled from underneath me, and I began to probably scream, people all around waiting to go to their planes etc, hearing my cries. One gentleman, who had also been in my “group” for the entire Summit, Chris Nieto happened to be standing there, and heard what was going on. Thank Goodness for that man. He took it immediately as he truly felt he needed to help me. He knew whatever news I had just received was not good at all, and as I tried to explain, I fell to pieces. I asked him to speak with the doctor at Baylor who was on the cell phone with me. I just was listening to this list after list, of things that were “wrong”, broken, out of place, from a broken shoulder, to a “broken back”. I nick in an Aorta, almost every rib broken, and again as he wrote down each item the list began to grow further into a place I felt someone had just pushed me off of the highest cliff known to man. Chris finished up on the phone, got me some water, all of my group gathered around, and Chris looked at me and asked me what I wanted to do.
I said “I need to go to Dallas”… ASAP, yet that moment I had no idea whether Jim would live or die before I even got on the plane. Chris told me he would be right back. In a few minutes him and the “Grassroots Manager” over the Summit for the Arthritis Foundation. Laura came to me and handed me the information and a “fax” I believe for me to go get my ticket and be on the plane headed to Dallas within a few hours. No hesitation, and within an hour I and Chris Nieto who lives in the Austin TX area, was with me, headed to the airport there in DC, so we both could fly into DFW (Dallas/Ft. Worth International Airport). He happened to be catching a connecting flight to go to another Arthritis Foundation sponsored trip in Colorado, which was for the Juvenile Arthritis Kids and their annual get together. He stood with me every step of the way. He made sure that I got my bags where they needed to be, got my ticket, and got me on the plane. In fact, he went and asked if I could be boarded ahead of some just due to the fact I was honestly in total shock at that time. I really could not at that moment tell you ALL that was going around and around in my mind.
Chris got me safe and sound to Dallas, helped me make sure I got my bags, and made sure I got hold of my son, who was on his way to pick me up at the airport. Then he had to get on his connecting flight, and as we parted ways, I just cannot tell you in words how much that dear man did for me. The kindness, compassion, the selflessness, all of the assistance and making sure I didn’t just totally collapse, was purely a miracle. And he was my walking, talking miracle for those first horrid hours.
He is truly a man of courage, generosity, of giving, of making sure everyone else is “lifted up” and are recognized for their achievements. He also has a dear wife, and two beautiful girls, one of which was diagnosed at only 9 MONTHS old with Juvenile Rheumatoid Arthritis. He helps at just about every event for the AF; as well as recently sits on their board of directors. Again, there is no way I could ever repay the incredible gift of help from Chris, and also the generosity of the Arthritis Foundation to fly me home immediately, no questions asked. I was on my way back to Dallas and that was just how awesome the foundation is and always will be.
I am so very proud to be one of their “Platinum Ambassadors” for 2014. In fact, since illness and some family issues kept me from going back to the DC Summit this past March, I received a box filled with a plaque recognizing my “devotion” as going the extra mile for them. I also received a great T-Shirt, which I wear proudly today, and an awesome reusable bag, plus some “buttons”, a “stress ball”, and our latest “Ambassador Outline” for all we want to do in 2015. Again, I’ve been able to keep up with Chris and his family through Facebook, and again I am still speechless when it comes to the pure and wondrous gift Chris gave to myself, and I know he would do the same for anyone who needed his help. It draws tears to my eyes of joy each time I recall just how wonderful of a man he was then, and how he shall continue to make his own mark against the horrid Arthritic Illnesses. Rhia Steele 4/3/2015
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Friday, April 3, 2015
Sharing More About My Pathway to being An Autoimmune "Voice" Activist, doing Advocacy & being An Ambassador for AI's - A Long Journey...
I am WAITING "patiently". I am supposed to get a huge "suprise" goody
box from the Arthritis Foundation. Since I was not able to attend the
Summit, they are sending me my "Platinum Ambassador" certificate, along
with some other things from the Summit!!! Hopefully another reusable
bag, so I can "advertise" plus maybe a T-Shirt smile emoticon
I hope. We got them last year, so maybe that will be with some of the
rest of it... I will take a picture after I get it so everyone can see
what kinds of things I got.... I am still so totally bummed about not
getting to go to DC I pray and pray, I will get another chance in the
future! :):) I certainly hope so... being in DC for me, is the ultimate
"advocacy" way to get your message across... I did last year in 2014...
and even though I didn't get to go physically this past time, my heart,
soul and spirit were there and I was "tweeting", blogging and posting
everything I could to help spread the word!
I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!
I will have more and better pics in a bit.. my battery on my camera needs charging. But, here is a portion of the awesome box I received yesterday from The Grassroots Manager at the Arthritis Foundation!!!! Even though I did not make it to DC this year and be awarded my plaque in person, I hope next year to go one way or the other... I was so surprised and honored to receive this!
- I am going to post a photo a bit later of ALL of my incredible things I received from the Arthritis Foundation. I was so thrilled when it came yesterday afternoon! I received my "Official Plaque" for being a 20014 "Platinum Ambassador", a new T-Shirt from the new Summit, several buttons I can wear, a "stress" ball, an awesome "reusable" bag!! This one has zipper pockets, and is lined very well in heavy plastic, with the whole logo on it from the summit. It is really awesome! I also got the brand new 2015 Ambassador "Too; lit", which is so nice. I have it downloaded onto my computer, but this one is so cool. It is in a beautiful bound booklet, with all of the "colorful" logos etc used this year for the Summit. By the way, it is "green" this year and so it my new T-Shirt! I am just so happy I received it with a beautiful note written by the "grassroots manager" who is just a real sweetheart! Laura has been almost like a "mentor" to me in so many wonderful ways. Also, last year along the way, we became "friends". I learned a great deal about her on more of a personal level and we shared things back and forth over the year about the Arthritis Foundation, but also what we had going on more about our own lives. I have truly been blessed to have her kind of take me under her wing. She was the person that helped to get me home, in the last years Summit of 2014, when Jim had the severe and very bad car accident at the last of the Summit. Her and Chris Nieto will always remain extremely special to me on many, many ways. I thank the Lord for them each day, and all of the help. compassion, support, and so much more they gave to me during that "trying time". Those times when life can all of a sudden within a breaths space throw a curve ball at you 90 MPH, & hit you right in the gut with full force. I am so indebted to both of them, plus the Arthritis Foundation; along with several others that gave me the support I needed when literally my knees buckled under the weight of way too much "life tragedy" when I least expected it. Pam Gill from the Central AF also was a huge help, and so many of the advocates, and my "family here on FB" were here day after day during those trying times when he was in the hospital for over 3 months. I never thought our lives would ever see anything
"normal" again. As I said before, and we continue to see it, a "new normal" whatever that might be in our lives now. Denise Tekell you have also been here to listen, encourage, support, & be such a very dear, dear friend even though you are going through a very difficult time in your own life. I admire you so very much, for the strength you show, for your tenacity to find your way through such again a time when life seems to be so turned upside down for you and your family. Yet, you always have a smile on your face, no matter the amount of pain, and of fatigue, & all kinds of health issues you are dealing with, you have a kind word for us no matter what life is also pitching at you also, at a pace so fast, sometimes we find ourselves almost unable to "dodge" it. So many of you here have lifted myself and Jim up in thought, positive light and prayers. I hope EACH and everyone of you (and you know who you are) always KNOW and TRUST we are so blessed and so very grateful to have you on our fighting side of life, when it decides to deem a rapid punch when you least expect it. As I finish up "HOPEFULLY" over a YEAR of the NIGHTMARE from the Sjogren's and Losing ALL OF MY TEETH to that horrid disease, and Hope for these "mini titanium pins" will continue to help give me the added support I so desperately need in order to hold these bottom dentures in place, only to now fight another battle of a "new pain" - well it is not so "new" but much worse than it had been in my lower back, hips and legs. I am still not so sure my hips are also a part of the problem. In fact I am going to call my orthopedic surgeon and make an appointment to see him hopefully ASAP and see about having my hips injected again very soon. So, once again I face a "new frontier" in this battle of autoimmune illnesses. They can cut you down much faster than you can get up all too often... more later...
I am sure (Jim and I in fact talked about this yesterday) that at times people probably wonder If I have lost my mind.... Well, I didn't have a whole lot to lose, since over the years many things have certainly waxed
and waned me in life. At one time, before I got into the "advocacy"
work, and before I got "chronically ill"... my "voice" in my writing and
some volunteer work was for "battered and abused" women (men kids
etc)... but mainly women. Due to a couple of events that happened to me
as a teenager, that I never spoke of here in this town at all, along
with the living hell of an extremely abusive marriage that I stayed in
WAY TOO LONG, before I finally decided to leave the entire state of TX
behind... and find "peace" somewhere else.. which at first I thought was
Lancaster CA, then things happened, I had to move back to TX, and again
put up with the mental, emotional and physical abuse of someone who was
"supposed to love me".... I had a knee operated on... and when it was
well enough, I moved to Seattle WA... there of which I thought I had
found my "life"... and I did in many ways. I loved my job there, and I
was basically more "healthy" that I had been in years and years. Then I
was struck down with yet some more abuse, that I got out of very
quickly. It was not long until I began to I am sure now have the sign
and symptoms of what I now know is the Lupus, RA, Sjogrens and so forth
... so due to life's changing path, just as a river can change course my
life led me back here, to where I grew up... and at first I was
angry... I was ANGRY AND MAD AS HELL! To be quite honest. That was the
last thing I wanted to do. But I did miss my Mom and kids... thus coming
back was a good thing... As far as the "abuser" he wound up in jail for
a long time right after me moving back. So, that kept him out of my
life... and after that, he has left me, (us) alone for the most part.
Thank goodness. Back before I moved to Seattle, due to mainly "hiding"
to keep from being abused (I was 40 at the time) many thought I was the
one insane, on drugs, etc... no one was ever told the truth at that
time... i hid it, kept it inside because I knew no one would believe me
then. They would assume and did, that I was the one with "the problem".
Later it all came out, and when that happened it stopped many years of
gossip, pain, and others thinking I was nuts. Anyway, My advocacy,
writing, poetry and so forth for many years had always been about the
abuse, how to get out, how to get help, and so on... then it took a new
twist after I became so chronically ill. During my "research" of what
all of these "diseases" were doing to my body, I saw much that "called
me into" the activist work. I wanted to TELL THE ENTIRE WORLD that I,
THAT WE... all of us NEEDED ASSISTANCE.. we needed a cure, a reason why,
MORE RESEARCH, more of everything, and I so wanted to be a part of that
change.... thus my own illness led me to this road of being an
Ambassador... and the challenge of trying to "make a difference"... but
when the ordeal with Jim happened a year ago, things truly changed
again... what many DO NOT SEE, are the days, times, moments, sometimes a
week or two, that I DO FALL APART... I do want to just say to hell with
it and quit... I don't want to make another step, see another doctor,
take another pill, and at times I am truly SICK OF BEING SICK FOR ONE...
AND #2 i am SICK OF ALWAYS TALKING ABOUT BEING SICK!! So, I like you
try to hold onto one moment, one hour, one day, one month... and step
forward sometimes to an abyss of the unknown... and allow "faith" to
lead me where I need to go... Even now, I know in my heart, if I ever
intend of being SERIOUS about WRITING my BOOK, I am going to have to
"cut back" on some of my other advocacy work... as much as I never
wanted to even think that, much less have to honestly deal with it. I am
under way too much "pressure and stress"... I've always been a "yes"
person... someone asks me to "help" and of course I am always willing
and ready to step up to the plate and do whatever it takes... but
between my own "all terrain" keeper of our domain, in other words,
taking care of the WHOLE HOME, all of it... and then so much with Mom,
that she honestly cannot do on her own... and my own illness, I am still
way too overloaded to find the time to write, to blog, and to do the
other things I feel that are also my "calling"....So, as much as I don't
want to, I am going to have to back out of some of the activism for
now. I can always pick it back up later.... but for now, I feel my work
on my book, our home, and Mom's things... as well as my own health has
to take precedence over some of the other things I have been
participating in... So, as in the next couple of days, I make that
decision of what to "hold onto" for now, and what to "bow out of" for
now... pray I am making the right decisions and I am doing what "His"
Will is, not just my own... so this is a perfect "holiday" to "roll away
the stone"... and find out what is "truly meant for me to do over the
next year or so"... I pray and hope for guidance, because Lord knows I
may mess it up on my own.... Hugs back and much love.
Thursday, April 2, 2015
The Realms of My Own Happiness #HAWMC
Check out my true happiness and happy moments below! #HAWMC
Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.
It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.
For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.
If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.
When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.
Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.
Rhia Steele
April 2nd, 2015
p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...
Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.
It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.
For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.
If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.
When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.
Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.
Rhia Steele
April 2nd, 2015
p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...
Wednesday, April 1, 2015
Clinical Trial possibly in your area, for a new "biosimilar" study!!!
Rheumatoid Arthritis Clinical Trial
The currently recruiting trial listed on CureClick for
rheumatoid arthritis is a clinical study for a biosimilar medication. We
have received several messages about this trial so we wanted to post
some additional information:
According to the FDA, “Biosimilars are a type of biological product that are licensed (approved) by FDA because they are highly similar to an already FDA-approved biological product, known as the biological reference product (reference product), and have been shown to have no clinically meaningful differences from the reference product.”
For this trial, one group will be given the currently approved and
available medication Rituxan® (rituximab) and the other will be on a
biosimilar version of rituxumab. Neither group will receive a placebo.
The goal of the trial is to see if the study drug is as safe and
effective in patients with rheumatoid arthritis and attempt to show it
has no clinically meaningful difference to the reference product
(Rituxan®).
MORE ABOUT THE STUDY FROM THE SPONSOR:
The purpose of this study is to compare the proposed biosimilar
study drug rituximab (GP2013) against a standard approved treatment
rituximab (Rituxan®) to see if the study drug is as safe and effective
in patients with rheumatoid arthritis.
- The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
- At least 174 people have already taken this drug in clinical trials
- All study related medications, analysis, hospital visits and procedures are free
Eligibility Criteria:
Participants must:
- be at least 18 years old
- have been diagnosed with rheumatoid arthritis for at least 6 months
- have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
- have received methotrexate for at least 4 months with 25 mg/week as the maximal dose
Participants must not:
- have significant liver disease, or congestive heart failure
- be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)
For more information about the study, please visit the link provided to you by your Ambassador.
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